About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Thursday, September 15, 2011

If you've spoken to me this week, you know I've been stressed. Kindergarten is hard. Being Harlie's advocate for her education is hard. But, I know it will get better. Everything is just so... new. The hearing impaired program went through a lot of changes this summer. The program is new to this school. The principal is new. And everyone working with Harlie is new to us. Our routine is new. And the longer days and harder work is new.

We are going to have a meeting next week to discuss Harlie's communication issues. I think I will feel much better after that. It's just that I know we need to make some changes to her IEP (Individualized Educational Plan). But, until then, they have to follow the one that's in place.

Also, the bus situation is really stressing me out.

Here's the skinny: Harlie goes to a school out of our zone that's about a 10-12 minute drive away. She is the farthest one from the school, so she is the first one to be picked up and the last one to be dropped off. Our pick up time was 6:48am to be at school at 7:33am so she's in her seat by 7:50am. Last week it changed to 6:53am. And then, without telling me, they changed it to 6:41am - so she missed the bus that morning. Even though it comes to our driveway, she missed the bus. Then it went back to 6:48am. It changes because kids are being added or removed from the route.

The drop off time was 2:50pm.

She is spending a lot of time on the bus in a day. And it is negatively impacting her nutrition. Today I spoke with Transportation. Our new pick up time (as of the beginning of the conversation) was 6:40am!!!! And drop off is 3:00pm!!! That equals TWO HOURS on the bus each day! I already wake her up at 6am. And we struggle getting in an oral feeding for breakfast. So, we have to tube her a lot in the mornings.

She eats lunch at 10:40am. She self feeds a few ounces of fruit (at the most) and the rest is formula via her g-tube. And then she doesn't eat again until she gets home after 3pm! By the time she gets in, and we get her snack ready, she's eating at 3:30pm.

So, when we sit down for dinner, around 6pm, she isn't ready to eat again.

And she gets a fraction of real food than she's used to getting. And this has it's own chain reaction of issues. Real food plus formula works better for her body than just formula.

I explained this to Transportation and she was sympathetic. But, the fact is that there are only two special needs buses that serve this school (take the kids that aren't zoned to go there, but go there for special programs). One bus goes to a totally different area of town. And one comes to our area. I asked her when they add an additional bus to create another route and she said when the pick up time is 6:30am.

She went on ahead and pushed back the arrival time at school from 7:33am to 7:40am. So, she changed our pick up time from 6:40am to 6:47am. She also said she would look at the route to see if they can do anything to help. But, I don't have high hopes.

So, we might have to drive her there in the mornings. But, I'm stuck in the afternoons. Cooper naps and there is no way I'm waking him every day and letting him get shorter naps five days a week. Plus, picking her up means I'm not picking up Murphy.

And then I think about how different (easy) it is to get Murphy up, dressed, fed and to school. Ugh.

That reminds me, Cooper is liking his new preschool. Today was his second day. And when I picked him up his teacher told me that he needs to work on his "listening skills." Really?!? I had no idea. Is there anyone that doesn't need to work on their listening skills? Especially a two (almost three) year old? Funny stuff.

Back to Harlie again, she counted from 1 to 11 (the number of days till her birthday) on Wednesday - using her voice, in front of the whole class! And her teacher told me that she asked for the "blue lizard" using her voice and she totally understood her! She is trying to verbalize so much more now!!!

Her teacher also asked me if I wanted to provide a goody bag to keep in Harlie's class. So, when parents bring in treats (cupcakes, cookies, etc.) for the whole class, she can pick something out of her goody bag so she isn't left out of the celebration. Awesome!!!

I've started working on Harlie's private therapy schedule. My plan (as of now) is for her to see her physical therapist and a prior speech therapist (to work on the device) on Thursday afternoons. I think I might hire an additional speech therapist for another day to work on her verbalizations. I've got messages out to two STs, so we'll see what we can work out.

I called our local rep for the company that makes Harlie's communication device. I am going to schedule some time with him so he can train me on some things on the device. He will also train school personnel, so hopefully we can work something out soon.

I made an appointment to see Harlie's plastic surgeon in October. She's going to have to miss a whole day of school for that one. That stings. But, there is nothing I can do. He only has clinic one day a month. He said after the last surgery that he would want to wait years before doing another one. And by the time summer gets here it will be almost THREE years since her last one. That is so hard to believe.

We are also going to see her local ENT next week. Ever since that episode when her ear bled, she keeps pointing to her ear and signing "broken" to tell me that her hearing aid isn't working - even though it IS. So they worked us in for next week to have her look in her ear and then be tested by her audiologist. I am hoping it's nothing serious or permanent. And I'm trying not to worry about it. But, of course I am!

I forgot that I haven't shown you Harlie's book! I will take some pictures of it and post about that soon. They are passing it around to all the kindergarten classes. Today another class read it and a lot of the kids came up to Harlie on the playground to say hi. For the most part they all seem to want to play with her. But one girl wanted a closer look at everything and would not get out of Harlie's personal space. Brandy tried to answer her questions (why this, why that) but she wasn't satisfied. The worst part is that while she was turning her head and studying Harlie, she had a scrunched up look on her face. When she wouldn't stop, Brandy had to send her away. Brandy said that Harlie didn't seem to notice the girl's expression, she just wanted her to get out of her face.

As smart as Harlie is, I can't help but wonder if she's more aware than she's letting us know.

Murphy

Murphy is 13 and is in eighth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).

Harlie Caroline

Harlie is 10 and is in fourth grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 50 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.

Cooper

Cooper is 8 and is in third grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!

Rooney

Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!